What do I do now?

[Justine_Case]

Hi About 3 years ago, when Covid started and it was difficult/impossible to see a GP, I started taking B12 supplements 3-4 times weekly.

I was experiencing many symptoms - fatigue and tingling and breathlessness amongst them.

Whilst not wanting to diagnose myself, I felt I had little choice given the GP situation, plus my daughter is B12 deficient, and had the same symptoms as myself.

Fast forward to November '21 and I was diagnosed with thyroiditis. By this time I was feeling so much worse, and had been to A&E a couple of times due to palpitations and blood pressure/sugar spikes.

I was tested for diabetes - which was fine.

I then joined this forum, who told me I had Hashimoto's - thank you!

Since my diagnosis I have had little help from my surgery. I have insisted on TSH blood tests, and following advice on this forum, have tested privately for the FT3/FT4 and vitamins.

I am not on Levothyroxine, as my GP says my TSH isn't high enough. I did ask another GP at my practice, and I was told the same.

Anyway now I have gradually been feeling worse, I have fatigue/tingling/breathless/weakness/pulsatile tinnitus and more.

I paid privately for an MRI scan last November, because of the tingling and pulsatile tinnitus. Fortunately that was fine, but left me none the wiser.

More recently my GP arranged blood tests for penicious anaemia. I told her I had been supplementing B12 for some while.

The results came back as 'satisfactory'

I was referred for a gastroscopy towards the end of last year, and it was established that I didn't have gastritis as suspected, but peptic ulcer disease.

I have noticed my folate tends to be quite high, I'm not sure if that is relevant?

At this point I don't know what to do, if this is a B12 deficiency causing my tingling symptoms, how will I know?

I wish I hadn't taken the supplements, but I felt so ill.

Before my most recent blood test, I did stop the B12 about 3 weeks before, and my B12 active level dropped by around 100.

I have included my recent blood tests(including GPs) - my TSH has dropped from 5.47 even though I actually feel worse.

I am gluten/dairy and soy free. I take a D3/K2 spray daily, use an iron spray 3 times a week, and eat iron rich foods.

Could do with some advice on what to do next?

NOVEMBER 2022

Hb A1c (mmol/mol) 34 20 - 42 mMol/Mol

HbA1C Reference range as per NICE guideline [NG17] 2015

20 - 42 mmol/L: Non-diabetic

43 - 47 mmol/L: Impaired glucose regulation/increased risk of diabetes mellitus

>48 mmol/L: Consistent with diabetes mellitus/impaired glucose regulation

25 OH Vitamin D L 73 75 - 175 nmol/L

Total 25(OH) vitamin D < 25 nmol/L is deficient.

Total 25(OH)D of 25-50 nmol/L may be inadequate in some people.

Total 25(OH)D > 50 nmol/L is sufficient in most individuals.

Total Vitamin D level >250 nmol/L - indicates potential for toxicity.

Please note change of reference range 23 Oct 2022

HAEMATINICS

Iron 19.6 10 - 30 umol/L

UIBC 43.7 24.2 - 70.1 umol/L

TIBC 63 41 - 77 umol/L

Ferritin 66 13 - 150 ug/L

Active B12 >150 37.5 - 188 pmol/L

Please note change of reference range 23 Oct 2022

Folate (serum) ** 39.9 8.83 - 60.8 nmol/L

THYROID FUNCTION TESTS

Thyroid Stim. Hormone H 5.47 0.270 - 4.2 mIU/L

Free T3 5.0 3.1 - 6.8 pmol/L

Free Thyroxine (FT4) 14.2 12 - 22 pmol/L

Total Thyroxine (T4) 90.0 59 - 154 nmol/L

Thyroglobulin Antibodies 55.5 0 - 115 kIU/L Method: Roche Cobas

Thyroid Peroxidase Antibodies H 186.2 0 - 34 kIU/L Method: Roche Coba

JANUARY 2023

VITAMIN B12 >150 pmol/L NORMAL RANGE 37.5 -188 pmol/L

FERRITIN (IRON) 81ug/L 30-650 ug/L NORMAL

VITAMIN B9 37.8 nmol/L 8.83-60.8 nmol/L NORMAL

FEBRUARY 2023

TSH 4.12 mIU/L (0.27 - 4.2) 

Free T4 (fT4) 15.2 pmol/L (12 - 22) 

Free T3 (fT3) 4.5 pmol/L (3.1 - 6.8) 

T4:T3 Ratio 3.378 

Vitamin B12 (active) 102 nmol/L (38 - 188) 

Ferritin 78 ug/L (13 - 150) 

[Charlie-Farley]

Hi Justine

So frustrating for you because it’s obvious you are symptomatic and though your 2nd blood test your TSH was JUST in range all of the other information speaks to overt hypothyroidism. These arbitrary thresholds mask the need to take account of symptoms and unfortunately doctors don’t know enough to use their discretion.

Did you do your 2nd thyroid function test early before eating and taking meds? Only water from the previous night.

TSH is prone to numerous influences and is so unreliable. I spoke to this on another person’s post yesterday- I’ll see if I can retrace my steps and tag you in the whole post was a good read.

I was only just over TSH of 5 when I was officially diagnosed. If I look back over all my visits to the doctor with seemingly random afflictions over the previous decade, most pointed to the progression of my hypothyroidism.

If you click on my face I wrote my profile as a case study to help others and I have written posts on self advocacy you can access these from my profile.

Perta puck through the NICE guidelines will give you a justification to get treatment. Why they have to wait until you are dead on your feet before they get it I will never know. There is a lot to understand and sadly most GPs simply are not trained to a high enough level to grasp what is going on - self advocacy is the way but takes a while to build knowledge. That said GPs are given way too wide a remit and are spread so thinly, it is quite possible to be ahead after about three months of reading in your spare time. During training I believe they get a day 🤔😱

[Justine_Case in reply to Charlie-Farley]

Hi Yes I made sure to have early morning fasting tests. I didn't take my supplements before.

I understand Hashimoto's can fluctuate between hyper and hypo - I certainly have had both symptoms, so sort of understand why the Doctors can't prescribe yet.

I will take a look at your profile thank you 🙂

[Charlie-Farley in reply to Justine_Case]

they feel they can’t - so you might need to do the work for them 😉👍

[Jazzw in reply to Charlie-Farley]

Was this the thread Charlie-Farley ? healthunlocked.com/thyroidu...

Certainly was an interesting read.

[Charlie-Farley in reply to Jazzw]

Hi Jazzw yes that’s the one - I should’ve done what you did and posted the link instead of tagging in. Then everyone can have a gander 🤗. I see the improvement in treatment entirely reliant on plugging the knowledge gap. No improvements In testing regimes will bring about change if the blunt tools reading off the test result sheets don’t even fully understand what a range is .

[Jaz19]

Hello

Have you had a asthma test ? It can cause tingling in fingers and toes too ?

I now have hashimoto from covid -19 and it exacerbated undiagnosed asthma too .

[Justine_Case in reply to Jaz19]

Yes I did an asthma test at the Pharmacy I work at not so long ago (due to the breathless thing) it was fine.

[Pickle500]

I can empathise and got struck down with severe B12 deficiency during March 2021, in the grip of the third lockdown.

6 months earlier Id come out of hospital for an operation to remove half my thyroid and a benign parotid (salivary) gland tumor. And one year before it all started with gastrointestinal complaints followed by a colonoscopy which removed three polyps.

So in the space of a year Id had quite alot of nitrous oxide. But I also noticed the a strange reaction to alcohol. So Id stopped until Christmas. I should've stopped completely and then gone back to the GP in Jan but then the lockdowns had a grip on all of us and it confusing to know what to do. Things got really bad on Easter wknd and I couldn't speak to a Doctor for a week. By then I couldn't think straight and misunderstood the instructions. I had psychiatric problems and started to supplement. Of course I tested normal and am now about to go to my first trip to a neurologist following a diagnosis for FND.

At no point was there a follow up for my hemi-thyroidectomy to check how it was.

At no point did the GP factor anything else in apart from to tell me that 'were seeing alot of somatic isssues' i.e. 'please don't be making this up and wasting my time'.

So the lockdown has affected us all in some very sad and unfortunate ways.

I think unless you can come off supplements, you must seek out private injections or learn to self inject. Join the Pernicious Anemia group for advice.

It rare for someone with Pernicious Anemia to be able to absorb supplements. They often need injections. So it may be just B12 deficiency. Either way, you will have to self treat. And you may find it helpful to visit a clinic offering private injections.